Any autistic PhD students struggling out there?

I dropped out. I looked at the people in positions above me and they were all miserable and stressed out through being forced into doing things other than research that I knew I wouldn't be able to cope with, and thought, what's the point in fighting my way through the PhD?

I hope you get that genomics position. My best friend is an academic in that field and is forced to spend about 80% of his time teaching and in meetings rather than in research, which I was under the impression was the standard.

Hi, I think you've gotten a lot of advice already, so I'll keep mine short. 

I earned a PhD 6 years ago.  That was before I knew I was autistic.  Looking back, I realized that I learned to find the good people.  I would gravitate towards people that were non-judgmental, understanding, open-minded, and protective.  It's how I picked my dissertation advisor/chief.  My dissertation was on a topic that hadn't been researched before, so there wasn't a tenured professor with experience on the topic.  What I did was find someone that had considerable political power in the department, had known me for a while, and asked them to be my advisor.  They accepted, and it was a great choice because people did try to attack me.  In fact, one associate professor tried to get me kicked out of the program.  They're ridiculous.  The political power of my advisor really did protect me from a lot of unnecessary neurotypical/hierarchy garbage, and I wouldn't have a doctoral degree if it wasn't for her.  She was amazing, and I was grateful in my acknowledgements page in my dissertation.  I highly recommend this approach.  

I hope this advice helps!

Bean said:

One thing I really struggle with is when I say something and I see the person is having a negative reaction to it but I am very unsure why. Reading expressions is very difficult so it's hard to do a "smooth recovery".

A convenient scripted response when you see the other person react badly is to say

"oh sorry, I'm autistic and I don't always say the most appropriate things.

Please don't read too much into this - and can we start that bit of the discussion again"

Most people will know autism has some communication issues and they will often be relieved that is is only this, not the fact you are the ragins sociopath they may have just suspected.

That can lead to some small talk around autism (it will be something you know a lot about but keep it brief and only about the social cues issues unless asked) which should save the situation.

Finally scripting put to some positive use...

Try to analise the interaction later on and learn from it.

Yeah honestly I think it's vital to get that time to yourself even if it is just a short while sandwiched in whenever you can get it. I certainly would not have coped without it. Also same on the spiky productivity profile, trying to master the bit by bit and slow and steady approach when I felt drained but couldn't really stop for too long was a real task in of itself.

I'm pretty good at independent working, but I do reach a point when I don't know the best way forward because my experience is limited. This is when I feel it would be good to either have a post-doc or lab tech present. Because sometimes you just have to show someone what you've done, very often you've done something small or silly and it just takes a human to actually look to see that.

I'm firmly of the belief that PIs should either have senior post-docs or senior technicians/experimental officers available, or have the time available to do 'bench supervision' themselves, before they are allowed to take on PhD students. Too many PhD students are left to flounder without having someone with 'hands on' experience in the lab to show them the ropes and trouble-shoot.

Thank you, this is a really good idea. I have an external examiner in mind though I hadn't thought much about internal. Maybe I should put more thought into that before it's too late. Even if I don't want to run the risk of putting blame on my supervisors I could highlight that my diagnosis came in the middle of my PhD, the effects of covid lockdown on lab work and that I had to change my entire project midway due to a change in supervisor in year 2.

This is actually a really good idea, thank you. I read a lot about human biology, psychology and neurology and then forget to look at socialising entirely. Maybe I can go about it the logical way if not the intuitive way. One thing I really struggle with is when I say something and I see the person is having a negative reaction to it but I am very unsure why. Reading expressions is very difficult so it's hard to do a "smooth recovery". Usually I will figure it out way down the line and be like doh! Of course! But at the time it is a total mystery. 

A lot of the social interactions in academia for some reason take place over food. I don't know if you have ever noticed this? Even at conferences. I can't sit at a table and eat with other people unless it is finger food, even then it is a bit dicey. I will literally and unwillingly bolt from the room like someone set my seat on fire. Makes it a little complicated. 

The one place I haven't gone to for a bit of assistance is the union - that may be another option to try, thanks.

I am determined to finish this. I absolutely refuse to give up, my fear is that I will not get it completed simply because I don't have enough work to put in a thesis due to meltdowns/time off.

I think you are probably right. I feel so bad taking time off and the people around me are really good at making me feel bad about it too. But maybe its the only thing I can control right now. Sometimes I just feel it is so counterintuitive to take time off to get more work done but in the long run it does sort of average out. My productivity profile is so spikey. Sounds like you have a lot of experience with this :) I think the times it gets hardest is when I am doing drug treatments on my cell lines and I have to be in doing it every other day for 3-6 weeks at a time - weekends, holidays, whatever, it needs done or the experiment is ruined. That's when it gets a little difficult. But maybe as you say, some half days or days in between need to be taken.

I guess what I'm trying to get at OP is that if you can't take whole days off can you at least steal some hours to yourself on a semi regular basis to keep yourself going but at a pace that is at least less draining/more healthier?

Not a PhD but a BA. This is why functioning labels are tripe it doesn't mean anything to be accepted into university if you aren't able to complete it. With that said, with higher inteligence comes the advantage of being a problem solver, I have started to write my own adjustments request (only I know what I truly struggle with and why) and will be asking my GP to write a letter to the gist of "what they said" that I will submit not long after the start of year 2 if I feel I need it because the 1st year was a bumpy road of extremely variable excecutive functioning.
I also had to learn and relearn effective self care because it felt like the work was non stop, if I didn't just call in sick every other week and have a do-nothing-day to decomress and empty the stress bucket I'd have been constantly spilling over into meltdowns and burnout, and then ground to a halt entirely. And a lot of the time I couldn't get a whole day at a time off so I'd split days, and have like 3 hours on a wednesday and 3 hours on a saturday to just do my own thing. It sounds weird to say it because even though I loved doing the work the workload itself gave me a 10 day long migraine towards the end that I kept "kicking the can down the road" by taking masses of paracetemol, and aspirin (didn't really stop the migraine just squashed it into a pressure headache I could just about keep working with) to keep going towards the end. Then when I eventualy stopped had everything done I was happy and yet still had a blow-up type meltdown. It took me about 3 weeks to really level out after that.

Bean said:

I love the research, the science, the writing, etc., but the social requirements are beyond my ability to deal with

You clearly are highly intellegent and can master incredibly comblex subjects on a routine basis (hence your PhD track) so to become capable in a social arena the trick is to use this same intellect to study social interaction.

Learn small talk (there are plenty of books about it) and basically fake / mask your way through the social settings.

When you approach it this way, you are educating yourself on the majority of scenarios and can pull potential responses from your prepared list to at least get by.

Maybe get a lapel badge that says (I'm autistic) which can be a conversation starter in its own right.

It will be costly in terms of your mental energy so try to keep these only occasional and try to create space the next day for a decompressing period.

Feel free to ask on here for advice on how to go about this if you want to do this at some point - probably best to deal with more immediate issues first though.

I was also thinking about the legal side - in your shoes I would join the union (Ucas or Acas - not sure which operates where you are) and speak to them about it. They tend to be very useful in these sorts of slightly grey area discriination issues and will do the heavy lifting in scaring the management in order to avoid a lawsuit later down the line.

Try to take some of that frustration and anger and let it fuel you - it can build a determination that will push through great challenges.

I would amass as much documentation about the difficulties you have experienced and arrange it chronologically. Things such as 'leaning on you' so that it looks like you are not being given privileges because you are disabled, is an extreme form of discrimination. When it comes to selecting examiners for the viva exert as much pressure as you can to get your choice and not some cronies of your supervisors. I know from experience that if you contact your internal and external examiners about the lack of effective supervision you have experienced, and make them aware of it, they will, if they are reasonable people, make allowances. I knew someone whose supervisor completely changed his whole area of research  during his PhD and consequently lost any interest in his current student's work and ceased to offer useful supervision. The internal examiner was made aware of this and ensured that the external also made allowances.

I thought about this too and have been in contact about what I would need and they have said that with the PhD I am currently doing I would be fine. Worst case scenario I take up another less specialised role until that one becomes available and I am already on a waiting list for that. Thank you for the heads up though

Thanks Iain, maybe I need to find some quieter spaces and time for meditation. This is something I have trouble sticking to rigorously because my day-to-day plans change depending on whether I am doing bench work or computer work.

I understand what you are saying about becoming a more independent researcher at this point. I do feel like I am exhausting every possible avenue with my work before asking for supervisor support. Most of the time I am saying X didn't work, I think it may be this, this or this and so I propose fixes for it or I ask if I can try a different type of experiment that may not take so long/be so difficult and outline what that would look like. Usually I am told that they don't know the answer so to just figure it out myself. But I am never allowed to swap to a different experiment even if the one I am doing is not working after a huge number of failed attempts. Trial and error is great but when I am in my final year and things are behind I really do need some direction from someone that knows what they are doing. I try contacting other researchers in other facilities as well but the equipment I have access to is often not what they are using and not ideal for what I am trying to do.

I will keep better documentation of difficulties as you say however after fighting for the past two years over these things I worry it is just uselessly expending energy I could be putting into my research. I am also getting everyone pretty annoyed at me and since a lot of science workers in academia, industry or the health service are heavily involved with each other I feel I may be shooting myself in the foot.

Iain said:

To help with your scheduling - you know you are overloading it so change it to something realistic.You will probably need to sacrefice a lot of your other activities to make the time, but this is all part of the crucible that is the doctorate - it is very focussed, intense and tempers your abilities to the point of being quite painful at times.

This is probably key here. You are right, I think I need to sacrifice other things and spread my lab activities out. Perhaps I am being too rigid in trying to complete a set of work all in one go and would be better spreading it across a longer time frame and mixing it with some of the computer-based analysis so I am constantly seeing results even when the lab work is not going well.

Then something else to consider, the NHS can be fussy about the qualifications they will accept for different scientific roles. Just having a relevant PhD won't always cut it. You'd best check if you need any special accreditation / qualifications a head of time.

Hi Peter, it has been really nice to read about your experiences, good and bad! A lot of the time I read very good advice that would only really help if we lived in an ideal world where everyone was treated as they should be. Sadly this is not the reality we live in. 

I am actually really good at the reading and writing part - I have already published some findings, reviews and editorials. I have also taken part in the review process and I understand how difficult it can be to navigate. I do very much enjoy this part and seem to be quicker at it than my peers. I am also really good at lay writing and public engagement work where I translate what I do into something intelligible to non-experts.

Where I fall down is the social aspect - if I'm on top of my game I can socialise and network and mask and everything is fine though I eventually seriously deplete my ability to function if I do it too much. The problem at the moment is I am so behind and under so much pressure my functioning is very impaired. I have become a stuttering mess when I try to communicate. People have a tendency to dislike me - one of my earliest memories as a child is when another girl that I didn't know came up to me and said 'I don't like you, I don't know why, I just don't' and she walked off again. This has sort of been my experience in life - I am always 'off' to other people and they can't figure out why. This part of academia is why I have decided it is not for me - I love the research, the science, the writing, etc., but the social requirements are beyond my ability to deal with. I wonder how they would handle these things if I was unable to talk at all? Can non-verbal people navigate academia? How does that work?

As it stands I want to work in the health service in a much more structured career and do computer based genomics work and research - I have found that I absolutely love data science and coding so this seems like a niche I can fit into (hopefully). I just need to make it 6 months and be able to get the data I need to write a thesis and to do that I need to stop having meltdowns from building frustration at a lack of resources/support in my Centre. 

I strongly encourage you to document all of this. This could form the basis of a lawsuit later on. #notlegaladvice

I did try to change my supervisors in second year and was unfortunately told it was not possible. I was barely involved in the process and left at home for two weeks with no idea what was going on or if I would be removed from the program. In the end they upped my supervisory meetings to once a week despite my reasonable adjustments recommending less face to face time where possible. This is what eventually drove me to complete a breakdown where I began crying, shaking, became unable to talk during a meeting, I then left abruptly and considered pretty seriously taking my own life. I ended up calling for help and had to take 3 weeks off to recover. I stopped trying to fight to get my adjustments after that. They usually just stick me in a meeting where everything is blamed on my ASD and not on the situation that led me to the meltdown. I think you are right though, that even if the staff are making me feel guilty for taking time off, I need to make sure I am doing it. Maybe I haven't been doing that. As you say, it pays back when I come back and able to work at double the speed of others.

I am sorry that your situation hasn't been much better xx

It sounds to me like you’ve been unlucky and gotten some very un helpful supervisors. The whole interpersonal conflict aspect of autism hasn’t been an issue for me because I typically got sympathetic and reasonable  colleagues and bosses in academia. Working outside of academia it has been an issue and unfortunately the only thing that’s been a solution so far has been to shift managers. That can be quite difficult in a PhD context when your supervisors are possibly the only experts in the University in the field you are researching.